Kathleen Sebelius at center of storm over child’s lung transplant

The plight of a dying 10-year-old girl in urgent need of a lung transplant has been taken up by some GOP lawmakers, and it’s shining a light on what critics say is a questionable policy that puts children further down the waiting list.

The family of the Pennsylvania girl, Sarah Murnaghan, has garnered the media spotlight, on cable news and in other outlets. And some GOP congressmen have joined the fray, quite literally “begging” HHS Secretary Kathleen Sebelius to intervene and save the girl’s life. Both Pennsylvania senators — a Democrat and a Republican — have also written on the child’s behalf.

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“I’m begging you,” Rep. Lou Barletta (R-Pa.) told Sebelius at a House hearing this week, asking her to suspend the transplant rules until they can be revisited. “Sarah has three to five weeks to live. Time is running out.” The child has cystic fibrosis.

At the hearing, Sebelius called the situation “agonizing” and said she had talked to the girl’s mother. She has ordered a review of the policy, which she acknowledged would take too long to have any impact on this girl’s situation, but said it wasn’t her place to pick and choose transplant recipients.

“I can’t imagine anything worse than one individual getting to pick who lives and who dies,” she said. Sebelius said putting Sarah next in line would disadvantage other young people who have also been waiting for transplants — including three in the same area. Helping one child could possibly hurt another.

Some experts agree that the lung allocation policy may need to be revisited; it has been for kidney and liver transplants. But they say no snap decisions should be made because of the media glare.

“Should Sebelius step in and do something? No. She doesn’t have all the facts,” said NYU bioethicist Art Caplan. Acting under pressure from a media savvy family “or the noisiest person in line” is bad policy, he added.

Transplant policy in the U.S. is made and administered by the Organ Procurement and Transplantation Network working with the United Network for Organ Sharing under contract with HHS. It’s inherently charged and complex because there aren’t enough organs for everyone who needs them, and people do die waiting.

Caplan said: “It isn’t clear no matter how many congressmen yell at Secretary Sebelius that she has the ability to do anything.”

Setting transplant policy is complicated. OPTN has expert committees that draft proposals and submit them for public comment. Approved policies are subject to the secretary’s discretion of enforcement or reconsideration, according to a summary of the regulations by OPTN.

The policy that the Murnaghan and their advocates are questioning is one that puts children under 12 at the bottom of the waiting list for lungs from adult donors. Young children would be first in line for lungs donated by kids their age. But far fewer of those are available.

In recent years, younger kids have been given greater priority for kidney and liver transplants, Caplan said, and that is in-keeping with the desire of donors that their organs provide as much life as they can. A transplant into an older patient might not provide the same number of “life years,” he said, an important consideration. But whether that’s in order for lungs as well depends on the actual science of transplanting adult lungs into children, not just the instinct to save a child.

Doctors can use an adult lung for a child, but they normally only use a piece of the organ. Another option that has been tried in some occasions: transplanting from a living donor, like a parent, Caplan said.

The Murnaghan family has issued a statement in response to Sebelius’s comments at the hearing, saying that they weren’t asking for special treatment for their daughter alone, just that the odds be evened for adults and children waiting for lungs, regardless of the donor’s age.

“All we want is fair treatment for all of these children, including Sarah,” the statement said. “We have yet to hear an explanation why the secretary will not do this.”

Caplan noted one reason that may give Sebelius pause: by moving someone up the list, someone else goes down. One child saved could mean another child dies. Sebelius, he noted, “doesn’t have all the information.”